RB (A Child), Re

When deciding whether profoundly disabled child should remain on intensive ventilation or be moved to home ventilation, the overriding consideration is the child’s best interests. The court must evaluate the likely benefits and burdens of each available course, including pain, discomfort, invasive procedures and the quality and viability of the life that each option would provide. Where expert evidence establishes that continued intensive care is the only tenable outcome, a planned withdrawal of ventilation may be authorised. The parents’ views and responsibilities remain important, but the decision must be directed to the child’s welfare.

RB was a profoundly disabled infant with congenital myasthenic syndrome who had remained dependent on artificial ventilation from birth. The treating clinicians and RB’s mother initially supported a planned withdrawal of ventilation, involving sedation, removal of the ventilation tube and consequent death. RB’s father initially sought discharge home following a tracheostomy and connection to a portable ventilator.

After hearing six days of evidence, including evidence from specialists in respiratory care, the court considered whether continued intensive ventilation in hospital or home ventilation was in RB’s best interests. During the hearing, the father changed his position and agreed with the clinicians and the mother that RB should not leave the paediatric intensive care unit.

1. Best interests. The court concluded that the only tenable outcome was that RB should not be discharged from the paediatric intensive care unit. The decision required an assessment of the benefits and burdens of the available options in light of RB’s welfare.
2. Home ventilation. A tracheostomy and portable ventilation would not provide a therapeutic solution. On the evidence, it would expose RB to further procedures and operations, with life likely to be uncomfortable and more probably regularly painful. His limited outward responses did not mean that he would be unable to experience pain or discomfort.
3. Medical evidence. The court was satisfied that the medical and scientific options had been fully investigated. The three experts in respiratory care were agreed that a life outside the intensive care unit was not in RB’s best interests. The independent expert’s detailed assessment of the benefits and burdens of future care was particularly compelling.
4. Parental responsibility. The parents had shown exceptional commitment to RB. The father was entitled to change his view after considering the evidence and assumed responsibility for agreeing with the course supported by the clinicians and RB’s mother. That parental involvement supported, but did not replace, the court’s welfare assessment.
5. Outcome. The court agreed that RB should remain in intensive care and that the conclusion reached by the parents and clinicians was the only tenable outcome. The endorsement records the planned ending of intensive ventilation through sedation, removal of the ventilation tube and consequent death.